Upfront
Dot Com Blues
A Good Doc Goes Overboard
as P2P turns into B-to-B
by
JACQUIE STRAX

New York, NY, August 23, 2000. This story begins with what looks to us like an act of petty spite -- and winds up in recent news about clinical research out of control. Mark Scholz M.D. is an oncologist specializing in prostate cancer. He affiliates himself with Daniel Freeman Hospital, Marina del Rey, where he has admitting privileges. In whatever spare time he might have, Dr. Scholz volunteers on the e-mail list P2P, handling prostate cancer patients' queries. He participates occasionally in other lists too.

photograph © courtesy Philip Greenspun

Last winter Dr. Scholz jumped in to help out in a PPML debate of a report about a new theory of how cancer cells react to hormonal blockade. He said this report should be debunked. He blamed PSA Rising rather than the actual sources -- a news release, published article and other references.

I replied that this report was accurate, gave him the url to make sure he really had had chance to read it, explained that PSA Rising is a patient press and invited him to write for us. Maybe that last part was a unrealistic, but it was meant sincerely. Of course I knew that Dr. Scholz is probably working overtime as a volunteer on P2P ("Physician to Patient").

Everyone who knows about P2P is awestruck by how doctors and prostate cancer patients come together on that list. We publicize P2P specifically under e-mail support lists. Often when people ask for help through [email protected], we tell them how to join P2P. We trusted and admired Dr. Scholz's dedication to patients, his plain-speaking and his medical judgment. We've often recommended him by name.

In any case, we forgot about this matter till this spring. Then by chance we learned that a couple of months after that little exchange, Dr. Mark Scholz took out a closely similar domain name, psarising.com. This was staggering. He registered the domain name psarising.com on January 27. He parked it at register.com, on a page which until recently (as a screen shot we took in June shows) carried an "Appraise Your Domain Name" link to GreatDomains.com, a domain auction. Great domains encourages people to put bids in the thousands and even millions of dollars on listed names.

I hoped this was an oversight. I wrote to Dr. Scholz briefly on May 31:

Dear Dr. Mark Scholz,

We see that you have purchased the domain psarising.com.

We're curious. Is there anything you feel like sharing about your plans for this domain? Might you be interested in selling it to us or in becoming involved in PSA Rising?

Receiving no reply, May 31 I wrote again:

Dear Dr. Mark Scholz,

We see that you have purchased the domain psarising.com.

I am quite surprised that you would do this without contacting us. The identity we have built up on the Internet as an independent patient-centered site matters to us -- and I would have thought it would matter to you, as a doctor who does so much to earn respect in the patient community.

I realize how easy it was for you to come along and put down your dollars for the name, but I am asking you to reconsider the situation.

On the Internet, we have helped publicize and support your efforts at P2p for the past 3 years.

Not sure what Dr. Scholz expects of families dealing with cancer, but evidently this simple query sent him into some legalistic blame-the-injured-party-spin. For starters, Dr. Scholz said he was put off by my accusatory tone. He said that he did not know me or who I was "representing." He said he knew nothing about PSA Rising, whatever it was. Yet he seemed to recall precisely (IMO) what was bugging him -- the exchange on PPML.

Up till now I deemed this letter privileged, but it is not. It is a legalistic communication addressed to us at PSA Rising, about a matter that affects the existence of this site. So we will share it with our visitors. We certainly need to bring some fresh air in on this sickening feeling of being treated as an "entity":

Dear Ms Strax,

When I purchased the name PSA rising, along with a variety of other names related to prostate cancer, my specialty, I was not aware they [sic] you or any other entity felt that they already "owned it." I must admit that I am put off by your accusatory tone. My only previous recollection of your name was in connection with another accusatory posting from you imputing bad motives to one of my postings on the ppml. I don't know who you are or who you are representing. You perhaps assume incorrectly that your psa rising organization, what ever it is, is something that I am intimately aware of. The fact of the matter is that I know nothing at all about it. If you had sent me some literature along with a more amiable note requesting my plans for the psarising name I would have been glad to discuss it with you. However I must admit that I am not very impressed by my first impression of you as manifested by the way that you are handling your initial communication to me on the topic of the psarising name. I would think that if you are interested in my either giving you the name or having me sell it to you you would have enough sense to approach me with a somewhat more respectful tone.

Mark Scholz M.D.

Immediately, I wrote back, twice, seeking some way to talk to him. Silence. We've been waiting for close to three months for one humane word from Dr. Scholz to settle this matter.

Since the inception of PSA Rising, on October 16 1997, our site has been psa-rising.com. PSA Rising is well known in the cancer community, it is linked to sites across the USA and serves visitors from all over the world. We have received recognition and praise from urologists, oncology nurses, pathologists, geneticists and science writers as well as from other prostate cancer support sites and, of course, survivors and families.

When I registered the domain name in 1997, it did not occur to me at that time to register all of the urls close to that name. Had I thought about it, I probably would have felt that any one who was interesting in using PSA Rising, would be a PCa activist and would have no desire to interfere with or cause a conflict with our mission. In all probability such a person would have at least constructive knowledge of the entity, having seen references to it, or even read posts of mine on e-lists, announcing new items and giving urls.

I would have expected that having been informed of the problem, any such person would not attempt to use a name so confusingly close to ours, or to trade in any way on our established name.

Mark Scholz specializes in treating and advising prostate cancer patients, so anyone can understand how he might want to use the concept of rising PSA for a personal site or for informational purposes or professional use. But our name is quite distinctive and we have used it in service worldwide for almost three years.

Anyone can understand why the doctor has taken out a dot com in his own name (markscholz.com). All kinds of names are out in the ether waiting to be made up. But what does Dr. Scholz have to gain by acquiring psarising.com? Anyone can understand that this might easily have happened by accident or confusion. We have offered to give Dr. Scholz whatever he paid to take out this name. But since May 31 he has not even replied.

So there we are. I have had to realize that the doctor probably did recollect PSA Rising, too well. He seems to have forgotten that in 1998 he wrote to thank me after I stood up for him when he came under attack. Yet he was not able to forget or forgive the fact that I stood up equally strongly for PSA Rising when he attacked an honest and accurate report we had published.

This leaves us feeling that he got mad because we do act on the belief that patients and partners need and can run their own independent news and information sources on the Internet. Meanwhile, even as this petty-seeming squabble goes on, the online cancer support scene is changing profoundly as business makes bids to take over the marketable functions of sites such as P2P.

This nation is close to an election that might settle the question of whether all cancer patients (and all sick people in America) will have health insurance, prescription drug coverage and a Patients Bill of Rights. The draft Bill of Rights requires medical decisions to be made by patients and their doctors and nurses, not by "accountants and bureaucrats at the end of a phone line a thousand miles away."

This is not enough. As Philip Hilts reported August 16 in the New York Times, the federal official in charge of the safety and ethics of experiments with human subjects says that conflicts of interest in medical research are so bad that "the system may have gotten entirely out of control." You the patient can be in the room with your doctor and nurse and never know where their interests lie. Doctors and research institutions "frequently have an interest" in the company making the trial drug, "and so stand to profit if the tested product proves successful."

Last week I got a request from the daughter of a man in his fifties who was diagnosed with a PSA over 300. His doctor put him on Zoladex with no antiandrogen (risking flare). His PSA fell, but now is rising into double digits. He has been advised to present himself for a clinical trial. No other treatment option recommended. Nor could he get any information about results for patients already treated in the Phase I and early levels of Phase II.

What he got was a pep talk on how he ought to enter the trial for the sake of humanity. The patient's daughter was so spooked by this pap and by the top-down system of clinical trials that she turned to sectors of the Internet that raise hopes of relief from advanced cancer from complementary therapies.

Some information about this specific drug, we found, is in NCI Medline database. It looks fairly promising, but the odds are it will be more effective for prevention or at most to prevent recurrence. If so, patients with advanced disease are just being used as bodies to test it on, really. Even more disturbing -- the hospital website advertises a commercial tie to the company making the experimental drug. The doctor in charge of the trial appears to have an interest in the company. The doctor published his results, shared them with his peers, yet would not disclose them to a patient (who was not expected to know where to look).

Full information in trial protocols (which are very large documents, quite distinct from consent forms) should be given to all prospective patients with time for study, so that patients can make genuine informed consent. This is one of several measures needed. No doctor should use his position to recruit blind guinea pigs for a drug which he personally stands to profit from.

Back to our trouble. One of our jobs is to offer first line support and information to people whose doctors assume "My Way or the Highway" powers of life and death. Does it matter two cents whether PSA Rising guards its own name?

It does. The person who is hanging on to psarising.com despite a personal appeal holds himself to be dedicated to prostate cancer patients. And he knows that my partner has fought a long battle with this disease. This tells us that even some of the best of doctors may fight to keep patients and their advocates relatively beaten down.

If even the best Internet doctors are under pressure, let them ally with us not against us. We need good doctors to join with us to help deal with larger issues. Sadly, we seem to have lost one overboard. Right now he is still tied to this website by his clutch on a name confusingly similar to PSA Rising.